My journey as a woman and mother of young children who is dealing with metastatic inflammatory breast cancer

This is troubling

I mentioned in a post a few weeks ago that there was a topic I wanted to bring up because I’m not sure why we aren’t hearing about it. When I went for treatment in November my doctor told me that we were switching chemos. Kind of took me by surprise. We generally switch when we have “reached maximum benefit for the amount of toxicity being put in your body”, so as long as it is working more than it is hurting your vital organs, you go with it. We hadn’t determined that to be the case with the Adriamycin yet so I was not expecting her to say that. The manufacturer wasn’t making it at the time and the supplier as well as the office was out of adriamycin. ?!?!?!?!

Evidently there is currently a shortage of adriamycin. Go figure. It is chemo! It is a life saving drug! What do you MEAN there is a shortage! As I looked into it I found out the FDA has a page of their website that is just for drug shortages. Another survivor told me her brother, the pharmacist, indicated that they are having this problem with several chemo drugs. So yes, second hand info but I trust this lady.

Fortunately for me, the base medication of adriamycin, doxorubicin, is also available in a slightly different form called doxil, so I was switched to that (and am glad my hair didn’t fall out again as a result). I am lucky. I guess. If you are going to be in this situation it is nice that they have another option but what about all those who are on things that don’t come in multiple choice? I mean, really, how do you run out of a chemotherapy drug, this isn’t aspirin folks.

The upside of the switch for me is that the side effects aren’t as bad. The nausea is way less but I’m still exhausted. The downside, it takes two to three times as long to get the treatment. But regardless, I think this is crazy.

Another thing that is drug related is that the FDA has disapproved Avastin as a treatment for metastatic (stage iv) breast cancer. Evidently it wasn’t helping ENOUGH women to a high enough degree; so now, even though you can still get it as a treatment, your insurance may not have to pay for it. Oh, did I mention it is really stupid expensive? Convenient huh. It helped me, it helped at least 2 other women I know personally and I haven’t spoken to anyone who felt like it didn’t help. The question was just whether it was the Avastin or the chemo they were taking along with it that really was doing the trick. Avastin – in simple terms – keeps new blood vessels from growing to the cantsir, starving it. It is called an anti-angiogenesis drug and is often paired with a more traditional chemotherapy, so you are attacking it with one drug and starving it with the other, but it didn’t ‘help’ enough women to continue to make it available to women with advanced breast canzur.

Seriously, we can use every weapon we can get. Even if it only helps 50% or only helps us live 6-8 months longer, that is a lot when someone is telling you that you don’t have a lot of time. If you can do 6 things that all help for 6 months, that is THREE YEARS! Metastatic kancer, breast or otherwise, doesn’t get the attention because most doctors and frankly a lot of people, just figure you aren’t going to survive. You know what, AIDS is incurable, diabetes is incurable – both are considered chronic. Once upon a time not so long ago, AIDS was considered a death sentence, now it is looked at as a disease someone can live a long time with. If you can’t cure me yet, look at me as having an illness that I can live a long time with and treat me that way. Don’t take options away.

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Ashley, this is appalling! What’s going on here? I am fortunate that currently this does not apply to me, because I got the drugs I needed. I can’t imagine what the outcome would have been if I had not. Having to do chemotherapy again is my worst fear, and not having the right stuff matters, to all of us. Thanks for bringing this to our attention!